Understanding and Treating Chronic Fatigue Syndrome and Fibromyalgia

In order to assist in understanding modern naturopathic holistic health care, I propose to use as models in this series a number of health problems such as Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (CFS/M.E.) as well as the widespread muscle pain problem currently defined as fibromyalgia, or Fibromyalgia Syndrome (FMS). In this article there will be a brief overview of these two conditions, and we will examine the common threads in causation, the differences, as well as ‘what works’ in therapeutic terms based on research to date.

I have chosen these two conditions specifically because each contains within its possible etiology a cluster of causative and potentiating factors and conditions which are remarkably similar. FMS and CFS(ME) also have a wide range of identical symptoms ranging from fatigue through impaired cognitive and memory functions, to muscular pain, digestive disturbances, headaches and sleep disturbance.(1,2,3)

By virtue of their ill-defined natures, these conditions have become a refuge, one could say a dumping ground, for a host of undiagnosed and apparently undiagnosable health problems. The majority of medical practitioners seem either to be unaware of the reality of the causes, nature and appropriate care of such problems or are openly disbelieving as to their very existence. These are often patients dubbed ‘heart sink’ because of their emotional effect on the doctor, as the patient enters the room, yet again clutching a list of symptoms and requests for help.

All too often classified as ‘neurotic’ with their symptoms ascribed to ‘depression’, this is a truly miserable population of people, who often feel profoundly misunderstood by those around them (sympathy is finite and six months into such conditions it is often in scant supply from friends and family) as well as let down by the medical profession who is either disinterested, dismissive or perfunctory in its prescribing of antidepressant medication.

To have to endure this sort of emotional and social isolation as well, as the cluster of demoralizing symptoms with which they are burdened, is clearly enough to depress anyone, and it is the experience of most practitioners and therapists involved in working with such patients that any apparent depression is usually a result, rather than a cause, of their problems. In the alternative and complementary health field a veritable industry has emerged which treats such problems with varying degrees of success using a range of approaches and methods - sometimes suitable and sometimes not. All too often what is on offer addresses such patient’s needs only partially, with predictably disappointing results.

There are no simple answers to conditions where causes lie in a mix of nutritional deficiencies, acquired toxicities, bowel dysbiosis, inadequate stress coping abilities, sensitivities and allergies, inappropriate or excessive medication, inadequate sugar control mechanisms, hormonal imbalances, poor posture and breathing dysfunction, current or past viral, parasitic, yeast or bacterial infections, impaired organs of digestion and elimination, emotional distress..... and more. There are certainly no magic bullets which can remedy a situation which may have taken many years to evolve.

These are a growing army of these walking wounded, the ‘vertically ill’ who are too sick to function adequately but are commonly not quite sick enough to become ‘horizontally ill’, actually bed bound, although this is all too often an outcome in severe examples.

Unless there is an underlying awareness of the true nature and causes of such conditions, and until there is a real understanding of the ways in which it is possible to offer encouragement for an abused and over-stretched immune system to begin to restore health, many forms of proffered help (orthodox or alternative) will succeed only in either masking or, at best, moderating the patient’s symptoms.

Understanding Homeostasis: Self-Healing

It is absolutely vital for anyone afflicted with a chronic illness to hold onto the fact that their body is a self-healing mechanism, that since broken bones mend and cuts usually heal, and that since most health disturbances, from infections to digestive disturbances, get better with or without treatment (often faster without !) that, in a healthy state, there must be in operation a constant tendency towards normalization and balanced function. This is called homeostasis.

Homeostatic functions (which include the immune system) can be overwhelmed by too many tasks and demands, because of (perhaps) any or all of a selection of negative impacts including nutritional deficiencies, accumulated toxic material (environmental pollution, either as food or inhaled, in medication, previous or current use of drugs etc), emotional stress, recurrent or current infections, allergies, modified functional ability due to age or inborn factors or acquired habits involving poor posture, breathing imbalances and/or sleep disturbances and so on and on.

At a certain point in time the adaptive homeostatic mechanisms break down and frank illness, disease, appears and as homeostasis breaks down, a state of heterostasis emerges.4 At this time the body needs help, treatment, and this can take the form of either:

• a: Reducing the load which is impacting the body by taking away as many of the undesirable factors as possible, by avoiding allergens, improving posture and breathing, learning stress coping tactics, improving diet, using supplements if called for, helping normalize sleep and circulatory function, introducing a detoxification program, dealing with infections, and generally trying to keep the pressure off the defense mechanisms while it focuses on the current chronic repair needs.

• b: Enhancing, improving, modulating defense and repair processes by a variety of means, mainly non-specific (described as constitutional methods, which will be explained further in later articles in this series)

• c: Treating the symptoms: while making sure that what is being done does not add further to the burden of the defense and repair mechanisms.

Meet Fibromyalgia

Fibromyalgia (FMS) used to be called fibrositis (among many other names) and even now when the word ‘fibromyalgia’ is used in medical writing it is often accompanied by the word ‘fibrositis’. The similarities between Fibromyalgia syndrome, Chronic Fatigue Syndrome and Irritable Bowel Syndrome are listed below.(5,6)

In Fibromyalgia, Chronic Fatigue Syndrome and Irritable Bowel Syndrome the following similarities are found:

Age: Young Adult

Primary Sex: Female

Prevalence: Common

Cause: Unknown

Chronic: Yes

Laboratory Studies: Usually Normal

Pathology: None

Disabling: Frequently

In addition to these similar, indeed identical, factors, all these conditions are also frequently characterized by pain, fatigue, headaches, disturbed sleep patterns, anxiety, depression, numbness and tingling in the arms, hands or feet, bowel disturbances (diarrhea and/or constipation on their own or alternating) all frequently affected by the weather, by activity and by stress and there are usually many painful and sensitive areas to be found on palpation in all of them. Irritable bowel problems will usually also be associated with palpable painful areas in the abdomen.

The Official Definition of/Criteria for FMS(7)

The most commonly accepted definition (devised by the American College of Rheumatology in 1990) is that the person affected needs to show:

• History of Widespread Pain

Pain is considered widespread when all of the following are present: pain in the left side of the body, pain in the right side of the body, pain above the waist and pain below the waist. In addition there should be pain in the spine or the neck or front of the chest, or thoracic spine or low back.

• Pain in 11 of 18 Tender Point Sites on Finger Pressure

There should be pain on pressure (around 4kg of pressure maximum) on not less than 11 of the following sites:

o Either side of the base of the skull where the subocciptal muscles insert.

o Either side of the side of the neck between the 5th and 7th cervical vertebra, technically described as between the ‘anterior aspects of inter-transverse spaces’.

o Either side of the body on the midpoint of the muscle which runs from the neck to the shoulder (upper trapezius)

o Either side of the body on the origin of the supraspinatus muscle which runs along the upper border of the shoulder blade.

o Either side, on the upper surface of the rib, where the second rib meets the breast bone, in the pectoral muscle.

o On the outer aspect of either elbow just below the prominence (epicondyle)

o In the large buttock muscles, either side, on the upper outer aspect in the fold in front of the muscle (gluteus medius)

o Just behind the large prominence of either hip joint in the muscular insertion of piriformis muscle.

o On either knee in the fatty pad just above the inner aspect of the joint. Children with FMS

Many children are also now being diagnosed with FMS, often starting with flu-like symptoms and then becoming chronic with sleep disturbance a major feature. Some children also display Attention Deficit Disorder (ADD) symptoms, fatigue, school and behavior problems and commonly a tendency to allergies. Some FMS experts also find that such children frequently have very loose (hypermobile) joints.

How Many People are Affected by FMS?

Muscular pain which goes on and on for months or years is now very common, often causing sufficient disability to prevent people from working or functioning normally, in fact Fibromyalgia Syndrome (FMS) is now the commonest disorder seen by rheumatologists, after osteoarthritis and rheumatoid arthritis.

Dr. Don Goldenberg, Chief of Rheumatology at Newton-Wellesley Hospital and Professor of Medicine at Tufts University School of Medicine, estimates that there are between three and six million Americans affected by fibromyalgia, mainly between the ages of 26 and 35 with the vast majority being women (86% females against 14% males according to many surveys).

Based on population size and surveys we can therefore estimate that between 750,000 and a 1.5 million people in Britain also have fibromyalgia.

In total it is estimated, by Professor Bruce Rothschild of Northeast Ohio Universities College of Medicine, that nearly 25% of patients seen at rheumatology clinics are actually suffering from fibromyalgia.(8)

How Disabling is Fibromyalgia (FMS)?

100 out of 394 patients (that is 25.3%) with FMS (all female) and 12 out of 44 males (27) were shown in a recent survey to be sufficiently badly affected by the condition as to be unable to work; they were effectively disabled.(9)

Almost all the others surveyed claimed that their FMS affected their job performance very badly. In Canada a single insurance company, London Life, reported in 1989 that it was issuing monthly long-term disability payments to over 630 people with a diagnosis of fibromyalgia, involving a total of around a million dollars a month.

Historical Confusion of ‘Names’

Just as ‘fibrositis’ has become fibromyalgia, so has Chronic Fatigue Syndrome now replaced the former terms ‘chronic mononucleosis’ and ‘chronic Epstein-Barr syndrome’ of the recent past, and ‘neurasthenia’ and ‘nervous exhaustion’ of Victorian times.

There is still disagreement amongst experts as to whether CFS is the same as Myalgic encephalomyelitis (ME) or not, and it seems likely that this argument will run for some time. In these articles, wherever chronic fatigue is not related to a known disease processes such as diabetes or clinical depression, or simply to over tiredness through natural causes (e.g. overwork), the two names will be bracketed together as CFS(ME).

Some doctors insist that the psychological aspects of these conditions is the most important cause and they use the terms ‘masked depression’ and ‘somatoform disorder’ to describe such conditions. This is strongly resented by those afflicted by CFS(ME) or FMS who see the psychological and emotional symptoms as being the result of their fatigue, pain and general ill-health and not as causes.

CFS(ME) and FMS: Are they the same?

There is also disagreement amongst experts as to whether or not ‘fibromyalgia syndrome’ and ‘chronic fatigue syndrome’ are not in fact the same condition.

Both CFS(ME) and FMS often seem to begin after an infection or a severe shock (physical or emotional) , and the symptoms are very similar. The only obvious difference seems to be that for some people the fatigue element is the most dominant while for others the muscular pain symptoms are greatest.

In other words for many people the diagnosis CFS(ME) and FMS are interchangeable terms, although there are certain symptoms (fever, swollen glands for example) which are found in a higher percentage of CFS(ME) patients than those with FMS, which sometimes make such a comparison less precise.

Symptoms Compared

One of the most interesting list of symptoms associated with FMS/CFS(ME) was that given to a conference on the subject by a leading San Francisco physician Carol Jessop, M.D., in 1990.10 The number of patients she has seen and studied (over a thousand) makes this a comprehensive selection of associated symptoms, and is even more impressive since many of her patients are referred to her by other physicians thus making the diagnosis more likely to be accurate that is to say that both she and the referring doctor have agreed that these people ARE suffering from FMS or CFS(ME).

Common Symptoms Found in Dr. Jessop’s Patients

Chronic Fatigue: 100%

Cold Extremities: 100%

Impaired Memory: 100%

Frequent Urination: 95%

Depression: 94%*

Sleep Disorder: 94%

Balance Problems: 89%

Muscle Twitching: 80%

Dry Mouth: 68%

Muscle Aches: 68%

Headache: 68%

Sore Throat: 20%

* Dr. Jessop stated that this was a ’reactive depression’ not a ‘clinical depression’ and that only 8% of her depressed patients had required prior medical attention for this before the symptoms of CFS or FMS emerged.

Physical and laboratory findings

Dr. Jessop reported the following symptoms and findings as well amongst her 1324 patients, average age 39, 75% of whom were female.

I propose that Massage Therapy used in congunction with a Medical Doctor will decrease the pain of Fibromyalgia. I am a Registered Nurse and a Certified Massage Therapist. I have a small Massage Therapy business and most of my clients suffer from chronic pain. Most have been to numerous specialists to control their pain. I have found that Massage Therapy reduces the need for pain medications. Much of the pain appears to be muscle pain from muscles which are unable to release, which could be compated to a muscle cramp that dosen't stop. Massage Therapy helps to release the muscles and allow the body to rest.
I incorporate stretching with Massage Therapy my Clients return for treatments at a frequency of two weeks to one month depending where they are in their treatment. I refer clients to the appropriate Medical Professionals when indicated.
Ken Elwood RN CMT

I totally agree on massage therapy to reduce pain of fibro. And also a reduction in pain meds needed to treat fibro patients. But most people with fibor are disabled or can't obtain gainful employment, and most insurance companies do not cover the expense. Therefor massage therapy is not an option for us.

Message

Posted by: singlemomof2May 28, 2008

My children bought me a spa thing for Mothers day last year. I chose to get a massage with it. Parts of the massage were actually painful, and the next couple days I was really quite sore. But then by the 3rd day my muscles relaxed and felt better than they had in a very long time. I only wish I could afford to do that on a regular basis.

I think that if we could do it on a regular basis the pain would go away with time. Even the pain from the message. Of course we would have to do it faithfully I think.

If only insurance would pay for message therapy. Rhonda

fibro pain

Posted by: rowan56May 19, 2008

I have had fibromyalgia for 11 years and have never found massage to be beneficial - in fact it creates a much worse pain which stays for some days. However I have had some temporary relief from Bowen Therapy but it is very short-lived. I find a mixture of light exercise, heat treatment,drugs and a balanced life, a positive attitude are what works for me.

Massages and FMS

Posted by: BrendJan 31, 2008

Ken: I've listened to every doctor that I've gone to and tried the physical therapy that was prescribed for me. I had a terrible time complying to the therapy because it was so painful, yet I want to get better. I am always unable to complete the therapy because I find myself in so much pain and in bed for several weeks at a time no matter how badly I want to (and I do try) get up and have an at least a somewhat normal life. I'm always appreciative of the care that my therapist put into their work and they seem to really care about my well-being. Unfortunately, I no longer believe that the doctors really know what is best for the FM patient. I feel like they are experimenting most of the time, yet I do feel like they are doing the best that they can. Sorry, but I think this is a condition that needs more research and more of listening to the patient, because after all we are the ones going through this hell.

Sincerely, Brenda from North Carolina

massage doesn't help me

Posted by: adronaSep 14, 2007

That's an interesting observation. I have had FMS since at least 1967 and have consistently found massage makes me much worse in terms of pain/range of motion. Sonic massage helps me as does working out in a pool and chiropractic. Every time I let some new CMT work on me it was a disaster regardless of their technique.

How many treatments did you allow the massage therapist to complete? Massage releases toxins that build up in the muscles which when released can make a person feel ill. Drinking water will help to dissipate these toxins. It can take several months for the massage therapy to release these toxins and to retrain the muscles. It is good that you found some treatment to help you.

massage therapy

Posted by: annavirgilNov 7, 2007

I HAVE FOUND AFTER 22 YEARS OF THIS NIGHTMARE THAT A HOT TUB HAS WORKED MIRACLES FOR MY MUSCLE PAIN. I MAKE SURE THAT I GET MOST OF MY BODY UNDER THE JETS. I HAD TO TAKE PAIN PILLS FOR AT LEAST 3 DAYS (AND DRINK PLENTY OF WATER) WHEN GETTING MASSAGE THERAPY. UNFORTUNATELY, I NEEDED MASSAGE THERAPY MUCH MORE FREQUENT THAN I COULD AFFORD TO ACTUALLY MAINTAIN CONSISTANT RELIEF.

I have found the only relief with Trigger point theraphy, which is different from the tender point exam of fibromyalgia. Trigger point theraphy concentrates on the studies of Clare Davies,NCTMB and David G. Simmons, MD. They co-authored the Trigger Point Theraphy Workbook and this book is outstanding for finding trigger points and relieving pain. Cost about $29.99 for the book.
I am still struggling with the label of fibromyalgia as the doctor has pinned that on me. I am 2 1/2 years into this diagnosis. The massage helped me walk out of the office one day feeling like 20 again - absolutely no pain.
It has to be an ongoing thing though for me.
I will get back with you on more later. I am short on time now.
Mary Watkins

my name is Marc J and i received a degree in Osteopathic Medicine from the Faculte Libre d'Osteopathie in France. i also have his license in massage therapy, which he received in Denver, Colorado. His osteopathic treatments specialize in the healing, hands-on modalities of cranial-sacral therapy, massage, sports massage, and orthopedic massage.
i've been treating Fibromyalogia patients for years and i found that the cranio sacral osteopathic treatments combines with visceral abdominal manipulation and massage therapy help very well to control the pain generated by fibromyalgia. we have a clinic in littleton , co area if anyone interested, they can have a complementary consultation
ph 303,347,9906
here's what CST
Cranial Sacral Therapy (CST):
Cranial Sacral Therapy is a technique based on Cranial Osteopathy. Like Cranial Osteopathy, Cranial Sacral Therapy seeks to restore the natural rhythmic movement found between the bones of the skull. It does the same for the movements of the sacrum. The purpose of this is to aid the circulation of the cerebrospinal fluid throughout the central nervous system.
Practitioners today rely on Cranial Sacral Therapy to improve the functioning of the central nervous system, eliminate the negative effects of stress, strengthen resistance to disease, and enhance overall health.
Using a soft touch generally no greater than 5 grams, or about the weight of a nickel, practitioners release restrictions in the cranial sacral system to improve the functioning of the central nervous system. By complementing the body's natural healing processes, CST is increasingly used as a preventive health measure for its ability to bolster resistance to disease, and is effective for a wide range of medical problems associated with pain and dysfunction, including: migraine headaches; chronic neck and back pain; motor-coordination impairments; colic; autism; central nervous system disorders; orthopedic problems; traumatic brain and spinal cord injuries; scoliosis; infantile disorders; learning disabilities; chronic fatigue; emotional difficulties; stress and tension-related problems; fibromyalgia and other connective-tissue disorders; temporomandibular joint syndrome (TMJ); neurovascular or immune disorders; post-traumatic stress disorder; post-surgical dysfunction, eye problems, depression, hyperactivity, sinusitis and many other conditions.

I have found that doing an slow dedox has helped me so much with almost everything but the pain is always there. We bought one of handheld ultrasound machine and this helps so much with the muscle pain.
Of course getting an good nights sleep helps so much and restig throughout the day. Also knowing one's own limitations is a must, I can't stress how much one needs to know when to stop and when to say no. You can also say that I may not be able to make it but please don't count me, I'll let you know at the time.
Walking helps when you are up to it but try some type of exercising along with stretching. They really do help.
Although we all experience different results but there are times when you do or can find something or an combination of treatments.
Just don't let it get you down so much that you sometimes want to give up, pplease don't ever give up on yourself. You are important in your lifetime and we learn many things while we journey through our health problems.....
I am like you and do understand,
ChyC